Craniectomy: Life on Hold

Craniectomy: Life on Hold

After my husband, Hugh, was struck by a car while riding his bike home from a workout, doctors rushed him to the nearest trauma center and operated on his brain. The next day, because he responded to family voices, my daughters and I believed he was on the road to recovery.

Less than 48 hours later, Hugh was rushed back into emergency surgery when he developed a right subdural hematoma. This time, doctors performed a craniectomy; they removed a portion of Hugh’s skull to relieve brain swelling. This operation reduces damage to healthy areas of the brain by allowing the brain to swell without being squeezed; it can prevent death and improve outcomes. That piece of bone — about the size of half a grapefruit — was put in the hospital freezer. I was told it would not be replaced for at least three months, the time it would take for Hugh’s brain swelling to recede.

These three months were the longest three months of my life. In the acute brain rehab center, I was told that Hugh should wear a helmet on his head every time he stood up so he would not reinjure his brain. To compound my worries, Hugh felt dizzy, he was wobbly and often tripped when he walked, and he was cognitively impaired. As I waited for him to be “put back together,” I felt as if our life was on hold.

After three months, Hugh’s bone was replaced without incident; and within two weeks, he regained the use of his left side, his dizziness abated, and his balance stabilized. Somehow, having that piece of bone back in his head restored his equilibrium.

I recently talked to a man who went through a similar experience, but he had complications. Bob Gray was a Chief with the Arlington County Fire Department when the 9-11 attacks occurred. He’s known for leading his department’s Technical Rescue Team in its search for survivors at the Pentagon. After 30 years in the department, Bob retired in January 2011. Two months later, he had a freak accident. He sustained a TBI at home when he fell from a ladder.

During surgery, Bob also had a craniectomy, only his surgical site became infected several times. He had to have repeated operations to clean the area. Over the next two and a half years, he spent a lot of time on antibiotics. During his final bone flap surgery, Bob was in the hospital for more than a week. Doctors discovered that the infection had affected both his scalp and part of his skull. When they tested the bone, they found MRSA, a drug-resistant infection, in the bone piece, which could have been deadly. Now Bob lives with a prosthetic bone completing his skull.

Now that the surgery is over and he has finished his last dose of antibiotics, Bob is hoping he will continue to heal with no further setbacks. “This whole process has felt like one step forward and ten steps back,” he says.

Bob’s wife Lesli tells the same version of Bob’s story, but she includes many references to her own personal stress. Like me, she was told Bob should wear a helmet, and, like Hugh, Bob did not like wearing the helmet. The more mobile Bob became, the more worried Lesli grew. With each new surgery, Lesli felt like this would never end. She said, “We were all okay with the idea of a new normal, but it started to feel like even that was not a realistic goal.” Hopefully, Bob’s prosthetic bone has resolved the problems related to his infections.

Today, Bob is back to dedicating his time to Project Rebirth, an organization dedicated to facilitating healing, fostering hope, and building resilience among first responders, veterans, and other community leaders. He’s glad to be back to his active lifestyle. Lesli says that she’s okay with how he’s doing, but she feels anxious when he is doing anything (like cycling) where he might fall. “I am hoping that more time will reduce the Nervous Nellie in me!” she says.

There are two similarities worth noting in our stories: both Hugh and Bob felt more incapacitated when part of their skull was taken out (dizzy, out of balance); and both Lesli and I experienced a lasting sense of anxiousness. My anxiousness has lessened with the passage of time, and I hope hers will, too.

I’m also hoping that through our stories others may feel more prepared if a loved one should have to undergo this procedure and may not be alarmed if they experience similar setbacks until the bone is replaced. I’m grateful that Hugh had a craniectomy. It’s a life-saving procedure for sure. 

Comments (74)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I am so happy to find this !
Wish this surgery on nobody.
Had mine on July , 25 2019 and have had PCM twice now .
Post craniotomy meningitis.
I have yet to be able to get off of the steroids and not have another flareup I am praying that after next week this does not return. I need to get back to work my life and my family. My life has definitely been on hold which is so foreign to me and many others who know me. Thank you all for sharing your stories and your experience and this article. Because I am so desperate right now to feel better it’s ridiculous. I had a lime sized brain tumor removed on July 25.

Hi everyone, I'm after a bit of advice please. Following a few weeks of 'unusual' behaviour my mum had a fall. To date we are unsure whether the fall caused the haemorrhagic stroke or whether she was suffering a minor bleed which culminated into her falling over. She had burr hole surgery and things looked to improve over 24-36 hours but then her brain swelled so much she suffered another stroke for which she underwent emergency craniectomy. It's coming up to 2 years now that the bone flap has been removed and we are still awaiting a date for the procedure. She desperately wants to have it done but I'm so concerned hearing all the risks and my mum is rather a complex patient (atrial fibrillation -and on warfarin, has a metal heart valve, suffers with heart failure, has scleroderma - plus a whole other list of health complications). I just sometimes think that its too risky to have the operation as she manages to get by as she is - although I have noticed some deterioration in her overall mental health during her recovery and it appears that could be improved by having a titanium plate put in. What I really want help with is my mum is desperate to go abroad (12 hour flight) to visit her relatives, but I'm not sure how comfortable the journey would be for her (given cabin pressure etc) does anyone have any experiences they can please share with me regarding how air travel has been for them. Is it even advisable to travel with just the bone flap? I'd really appreciate any insight.

Hi i am a craniotomy aurvivor for 3 years.. my feeling was ok.. i did not undergone for titanum mesh i was scared then maybe i cannot survive.. but just now i accidentally hit the glass door and i feel dizzy.. i am qorriwd of my self since i am working her in abroad as a domeatic helper and currently on vacation her in lebanon.. do i have ro worey then aftee hit in the door??please anyone expwrience please share..
Thank you
Shiela

My best friend Suzette has been going through hell over the last 2 years. At 37 she had a brain aneurysm and is just had her 3rd titanium plate removed because her body once again had rejected it. She has been diagnosed with MRSA also so her options for antibiotics are limited which makes it seem next to impossible to stop any infection she may acquire. Today she is recovering from her last plate removal surgery with what seems like no hope in site for her. Its so very hard to watch someone be treated like a guinea pig. From the beginning to now she has had 19 surgeries which include multiple shunt surgeries....things seem so hopeless. After the first plate replacement surgery she literally got out of bed 3 days later and walked down the hospital corridor, not she needs help to sit up and basically move. Suzette is absolutely exhausted and has become trapped in her body....its heartbreaking to watch. Is there anything else that can be done other that trying the same thing over and over?

Also, I have been hearing that CBD oil can increase brain function and help with aneurysm and stroke victims? Any truth?

I should mention that Suzette had suffered a stroke during her coil surgery to stop the bleeding causing her to have limited function on her left arm and leg. Therapy had helped her in the past gain back her leg and arm functions but now it seems that because of all her complications she is slipping backwards and losing those abilities quickly with every failed surgery.

Any suggestions or comments would be greatly appreciated...

Hi

I am going through a similar thing with my Dad :( he had almost half his skull (right side) removed last May (2018) after being assaulted and hitting the ground. He has had 2 cranioplastys to replace the skull with a titanium plate but both got infected and had to be removed. We have now been told we have to wait a full 12 months for them to even consider operating again. He pretty much regains full movement in his left arm and leg when the plate is in but when he is without one his mobility declines rapidly. I'm so worried he is going to decline so much in the next year that it will be impossible for him to regain his mobility again. This is so hard and I feel for everyone experiencing what we, our family and friends are.

My heart goes out to you and Suzette. I don't have any answers... but I can share that you're not alone. We've watched our daughter suffer for the last 4 years with multiple brain surgeries, etc from being thrown from a turning golf cart. Some of her situation is similar to Suzette's - somewhere around 19 surgeries ( we lost count, most were brain surgeries), shunts, right side paralysis and now contracted legs, both paralyzed, speech and comprehension difficulties, inability to get up, ... I've heard that progress is best in the first year or two, but after that it's more difficult. In our situation, we continue on a slow, downward spiral. Be sure to find something in life to help you smile... You need respite for the long term haul. Hugs.

Hi everyone,
My partner had undergone a craniectomy almost 4 years ago, and ever since then he hasn't had his bone flap replaced. The doctors say he might have a titanium mesh instead. I'm really nervous about all of this & would love to hear your experiences both positive and negative, any tips or just relevant information you think I should know about.
Thanks in advance !!

Hi Sakura,
We've opened the topic of craniectomy and bone flap vs. titanium mesh to the BrainLine Facebook community: www.facebook.com/brainline/posts/10157573915362240

"My husband had a TBI in July 2018. The bone flap was removed and was placed inside the tummy for safe and sterile environment. However, flap got infected and titanium mesh was used after three months after TBI. He improved so much after the titanium mesh was done. We are six months now post titanium mesh. All good. Rehab and healing now. Go for it"
-- Prithee

"My sons bone was replaced with titanium. He also had his bone frozen, but surgeons decided to go with titanium after an infection. It was also a nerve-wracking time having to enforce him to wear his helmet, and of course, with a brain injury he kept forgetting"
-- Colleen

My 7 year old son was assaulted by a teenager in our neighborhood a little over a week ago. We took him straight to the emergency room at our local childrens hospital, where they did a CT scan and told us he sustained a depressed skull fracture. They did an emergency decompressive craniectomy and removed the hematoma that had formed. So far he has made a miraculous recovery. We are already home from the hospital, he spent two days in the icu and three in a regular unit before being released. He was fitted for a helmet; he doesn’t have any issues moving his limbs, his personality and speech are unchanged, he has slight balance issues and some dizziness and headaches but overall I think he’s doing well. I am freaking out a little because everything I am reading on this procedure and the following cranioplasty on the internet basically says he will not be okay. This forum has made me feel a little better hearing from people who have had this surgery before and survived. I am having a hard time getting him to slow down and I am just scared we will have to live like this for months. Initially the neurosurgeon said the flap would be out for two weeks, and then right before he was discharged they said two weeks to four months. Can anyone tell me the average time the bone flap usually remains out for? Thank you so much.

Usually 3 months

My boyfriend had a car accident last week and they said his brain was swelling and he had slight bleeding. They rushed him into o.r. And took out his right skull (bone flap). So the brain could have room and they said that if all goes well 3 months they'll have it back in. Each day he's improving by walking, talking, and eating from not knowing if he'll be ok cause the doctor said it's going to be about 5 to 7 days to see if he'll make it. But he's veering to the left when he's walking and his short term memory is affected. Long term memory he has but he's disoriented and confused. I'm so anxious but patience is key cause I understand this is a long recovery.

My husband had a massive stroke last year and is still waiting for cranioplasty, but with a titanium plate. He is paralysed down left side. I am hoping after the procedure, when ever this happens, it will help to walk again. A year on the waiting list is so disappointing and husband is depressed. If we had the money, we would pay.

I get "my skull put back together" Feb.6, 2019. Thank you for this blog. Springfield, IL

Hello, on the 28 July 2018 my husband was assaulted whilst trying to separate an altercation with some other friends. He endured severe brain injuries and on day 1 of his injury had an ICP monitor put into the skull to monitor the pressure and swelling. The swelling increased after day 4 and he had to go for an emergency operation to remove a part of his skull to release the pressure. The bone flap was placed in his abdomen area. After 4 weeks, he went to theater to replace the bone flap however the bone flap was infected and the operation did not proceed. After 2 months he developed hydrocephalus and had a shunt put in. However after 4 days this had to be removed due to over draining. A programmable shunt was then put in. This worked fine and was switch off remotely after 2 weeks when the fluid levels were ok. After a 3 month period, a cranioplasty was done using a titanium mesh to replace the bone flap. Within days of this procedure, he started to talk a little, memory gain, use of his right arm and legs, eating etc... The next step is rehab so that he can learn to walk again and use his hands. He had a seizure a couple days ago but the doctors say nothing serious as they just need to increase the dosage of the anti-seizure medication. He has been in hospital for the last 115 days and soon to be discharged to the rehab facility . He has lost a lot of weight but all good now. It's been a long, tough road but we can finally see the light. Any recovering patients had seizures post-cranioplasty with a titanium mesh?

Following a TBI due to an assault, I had to wait 2 years, for my crainioplasty. During this time, approximately a third of the top of my skull was missing. I forund this story whilst trying to see if it was normal to wait this long.

Did you wear your helmet while you waited? Husband is waiting for surgery and they say maybe August.

Where are your family member's living while they await cranioplasty? Have you all found a helmet that they can wear in bed while they sleep?

My brother was on a scooter and hit by a truck on May 31st this year. His plate should be finished and surgery to replace the left side is scheduled November 6th. He has been in the hospital the whole time. He is no longer able to to make words and this gives me hope that once the piece is on he will improve. He won’t be able to come home but I hope for some quality of life for him. The stress and anxiety has been unreal for both my mother and me and there is still such a long road to go. Thank you for this post. I needed someone to relate too and how they handle this situation. We all have not gotten to move forward yet to what is the new life. Wow it is so tough. This gives me hope.

My sister was hit by a car has bleeding on her brain doing surgery as I type this she has no ins ,will they send her to rehab or any help for her if she comes through all this ? I am her only family and she is at least 10 hrs away from me we have not been around each other in a while due to her drinking problems,it’s 6 days to Christmas my kids and husband are here should I go to her or wait to see what happens? Her boyfriend is with her I don’t know what to do ? Please help what would u do ?

Thank You! My nephew undergoes Cranioplasty tomorrow just over 12 weeks post severe head injury. Your positive story has helped me. I understand feeling anxious!

Hows everything??

Thank you for posting it definitely gives me some much need insight on the road ahead for my family.

Wow, all of these incredible stories. I was in a car accident 3 years ago (at 21) and rushed to the hospital for this surgery; doctors were predicting many different outcomes during my coma (none of which were very pleasing) to my family. There was a point in the hospital when I was literally on the verge of death, then the lord literally sprinkled me with another chance like the guy that got famous for sprinkling salt on the meat. Up and and out of the hospital in 3 weeks, helmet and all. 3 month later after the swelling went down got my surgery and prosthetic skull plate, no symptoms of anything at all. Made a vow to do spectacular things with my life as it is my duty to help others.

Hi there, Thanks so much for your story and for all the wonderful comments above. My father is going through his third surgery in 3 months and he did have to have part of skull removed due to infection and wears the helmet currently. We are told he needs antibiotics to kill the infection before he can go in and get the bone replacement surgery. We want to take him to the best place for this surgery. Where did you go? Please advise. Thanks, Jennifer Gilman

BALTIMORE SHOCK TRAUMA ON GREEN STREET, BALTIMORE MD. #1 in all the world

I am Jennifer's dad. Since she wrote this post I had 3 more surgeries. Peek replacement flap placed, infection cleanup, and Peek replacement removed. Now awaiting to be infection free for next surgery, titanium mesh. This is getting old. Wife and kids keep me going

My brother went under the knife last Sunday, April 29th, for ruptured aneurysm. There was massive bleeding and it all happened so quickly. What happens after craniectomy? He still hasn't woken up. It's been days. What can we expect? We feel so helpless and afraid.

This is a nice post explaining a lot about life on hold. I really appreciate your efforts to do so. Keep Posting.

This is really inspiring. My husband was in a car accident September 11th. We are actually in the hospital now. He had his bone flaps put back in. But has been asleep since the surgery 2 days ago. So I do not know the improvements yet. I hope his success story goes as well as a lot of yours. I worry because some of his brain was damaged due to lack of oxygen to the brain before paramedics arrived. So we will see. Thanks for the inspirational story

I had a cranioplasty using an artificial bone flap. This was preceded by infection meaning that my original bone flap could not be used. The four months that I had to wait until the Doctor was happy that the infection was under control were difficult. Loss of balance, difficulty with speech, impaired mobility, the list was long.
I returned home today, the difference is remarkable. I can walk, talk, and I am looking forward to gradually regaining most if not all of my function.

My husband had a motorcycle accident in May of this year, he had a cranial removed on his left side 1.5 weeks after his accident, he was improving, needless to say, I was kept from him for almost 2 mos by his mother and she signed to ha e him moved with a broken shunt in his brain to another hospital, he had issues, they had to do surgery in hospital room and he developed staff, he has had 6 shunts since one being a permanent one. He had his bone flap replaced 2 weeks ago and he has gone lethargic because he has anair bubble and blood behind bone flap. Dr.is just waiting, I m very concerned. I don't kniw what to do, he still has trach in and I want them to try a talking trach but getting push back from his mother. Is this normal?

A wife has legal standing over a mother regarding medical decisions for her spouse. Don’t let her do this or at least speak with an attorney.

Hello, I am 22 years old and I received a craniatomy after I was in an accident about 2 months ago, and my skull has been replaced a week ago. My question is those who had loved ones in a similar surgery or anyone who's gone through this yourself, does anyone know that life will recover like it was before? Or will this be almost a disable for anyone who has gone through this.

Hello quick question. My boyfriend recently was involved in a really bad motorcycle accident. He had many problem such as fractured skull on one side along with face and bleeding on the other side of the brain. Along with broken ribs from chest compressions. He recently had the surgery to fix broken face bones which I find is a good start. Then about a week not even more or so 3/4 days later he was cleared to start rehab. He has amnesia and can not remember who I am. They think it may be short term. I was wondering due to the fact that I've seen almost everyone post the same length of time. Is it usually 3 months after a craniectomy does the bone flap go back or in general a doctor looks to see if it's ready to go back? I'm really curious if anyone can give me some sort of info on that because google and research in general hasn't shown anything. I just want to know if it's 3 months due to the fact that before this accident we planned to start a family that next week. Thank you again everyone for your time and help.

My husband was shot in the head on 12/31/16. Due to his brain swelling they removed his bone in his skull. He lost feeling on his left arm and weaknesses on his left leg. Reading these comments give me hope that he will improve once his flip bone is replace. I really hope so. Our life's is not the same waiting on his to get better

Hi. My husband had splinter running across frontal skull taking away his right eye and had to undergo surgery.

Since then we've come a very far way but haven't yet reached how smart he was originally. Although, he is far better than what doctors had warned.

It is going to be two years in three months. I wanted to know if your spouse became all fine after craniotomy?

Hi everyone, I've had two craniectomies and since had to put my "life on hold" twice. The first was an emergency surgery to allow my brain to swell after I was hit in the head by a while playing softball.The second one was done to clean out an infection I got after my bone flap had been replaced. There was a brief period of time when I actually had a full skull before Then a mysterious infection hit my life Islas somehow become the x files. It's like a cruel joke that somebody is playing on me :( I now await my second cranioplasty without any idea of whether I will get back my own bone flap or a prosthetic. It's difficult to live with a bone flap I'm always paranoid about rolling onto my right side while I sleep. I'm also tired of wearing a helmet all the time.

That sucks. I had cranioctomy 13 years ago and recently sustained an infection. I now may have to have it done again. Hopefully, the science will improve to allow for alternatives to this rather harsh invasive procedure.

I saw your post and had to respond. I am a 29-year-old woman who is a year out of your exact situation. I suffered a subdural hematoma from a car accident, had a craniotomy with burr hole treatment (a straw basically draining your blood), but then it became infected with 5 staph infections after my staples came out.

I had the second craniotomy and washout one month after the first. I endured 3 months of IV Vancomycin at home after discharge but something felt awful in my head. I could literally feel the screws from my bone flap, pushing themselves out. I was in severe pain but was scared to go back to the original hospital! So I got a second opinion a county over.

Last June, 2015, a surgeon saved my life by believing in my concerns and went into brain surgery blind. No scans currently can allow our hardware to be seen accurately. In surgery, he found all the screws loose and and the bone flap destroyed, due to it hitting my healthy skull with every heartbeat. He performed a craniectomy and cranioplasty. Basically making a new bone flap, using pins instead of screws, and stapled it up.
You can overcome this. I am fully functioning now when before the 3rd surgery, I could hardly speak, had terrible short-term memory, and right-sided weakness. My saving grace was intensive outpatient therapy at a neurorehab outside of Detroit. 5 days a week, 5 hours a day, for 5 months. Today when meeting new people, they all say they would never have guessed all that happened by how I present myself and speak. The 3rd surgery changed my life for the better, as I know it can do for you!

What exactly do you mean by "regained the use of his left side"?

I am trying to post again...to the woman concerned about having the surgery and being home with your young son's. You are sent home with in just a few days. Your first few days home you are in need of some help from your family but you will be home with your family and very coherent when not on pain meds. I had a bit more than the craniectomy done but I am feeling so much better. Don't prolong your surgery. Symptoms can stay the same or worsen. No one knows when this can happen and for me personally I did not want that risk.

To the person who most recent posted about concerns to return back home to her two young children. I had this surgery 1/31/17. I was home 4 days later. The first 3 or 4 days I needed assistance from my 3 grown son's and husband. Week two I was able to be up and around. You can't lift the children or a gallon of milk at this time but you will be home with your children.

My wife after 11 years had to have her bone flap re-removed after replacing it. If I would have known back then I would have never had the use the same bone flap. Our neurosurgeon said it is safest to have a Prosthetic to replace it. I can tell you that the last three months have been filled with her fighting a infection and about five weeks in the hospital. Her bone flap was just replaced and and just overnight what a difference it has made having her whole again. No more nausea spells and balance issues.

I suffered a ruptured brain aneurysm in October while seven months pregnant, (thankfully baby survived the surgery and was born in January). During surgery I suffered a stroke and lost function of my left hand, and doctors could not put my bone flap on my right side due to the brain being swollen. Now I'm just waiting for a second surgery to put my bone flap back in. I'm nervous about it because I have no idea what to expect for this surgery and don't want to be in the hospital for too long away from my two sons who are two years old and a newborn. I know medical advise can't be given but if someone who went trough this surgery could comment? I will be checking on new comments. Thank you.

I had 3 brain aneurysms in 2006, had brain surgery and 2 months later MRSA infection. I just had my 11th surgery on Dec 6,2016 because of another infection that after almost 5 yrs set in. Now no skull again, home on vancomicin picc and waiting for surgery #12. Let's hope this will be my last? Chins up and move on, keeping a positive attitude also can help.

I feel your pain. I am awaiting my 9th surgery next June 2019 to replace my skull plate. Brain tumor surgery 3 times then infection, plate rejection, antibiotics, titanium back in and another infection, wash outs, infections.....Crazy time in my life yet I am very Thankful for my life even as it is. I have a wonderful team of MD's at JHU , loving family & friends and a God who loves me and has this in His Big Strong Hands. Hang in there and yes Attitude is everything!!!!

I've had the same surgery. The neurologist told my mom the same. In 3 months the swelling will go down and then bring me back so they would put the bone back to my skull. The funny this is, they didn't put the bone in any freezer they slit above my right abdomen and put the bone there for healing. I went back 3 months when the swelling went down but the docs told me they couldn't do it because I didn't have health insurance. That was in '04. I finally had the second surgery in 2010. Imagine living like that.

After waiting literally years to have your skull replaced, how is the outcome. I keep hearing the longer one waits, the more likely to have rejection of the new one???? I had a piece of mine removed 1-14-2018 when I fell 150 feet from a cliff and my skull was broke and a piece went into into my brain, thus they removed it all and I'm stuck w a half dollar piece gone!!! So far no side effects but am looking forward to getting g my head back !!!

I had both surgeries - first for a subdural hemorrhage, then 2.5 months later I received my bone flap. When I had my "partial skull" everything was a challenge. Eating hurt because it hurt to move my jaws, cold was an instant brain freeze, hot food was an instant headache, riding in the car was a nightmare - my brain was a loose egg flying around with every slight movement. The subdural hemorrhage caused brain herniation so by giving my brain room to work it all out, that issue corrected itself. When I got my one flap back it was as if someone snapped their fingers and I was all well physically anyway. I was out of the hospital in a tad bit under 46 hrs. Mentally it is a bit slower, but doc is referring me to some counseling. My Hubby too put our lives on hold while I recovered. Truly an amazing procedure. It has been just a bit over 6 months since the brain nightmare, and 4 months since the bone flap fix. I am now all better.

Hello...I have a friend who is now as we speak under the hands of surgeons going thru a craniectomy. She is so young, only in her twenties. She was a passenger on a motorcycle accident and was his by another on coming car. She is in a coma and has had severe brain pressure, with 6-7 skull and face fractures. I pray this will ease the pressure for her brain and help her recover. She is a sweet soul. ...

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